JME is so so so annoying

Rant

I wake up, if I get up instantly from bed or overstimulate my brain by moving + thinking + doing other stuff, I start to get myoclonic seizures, they tend to appear on repeat between 20s - 2 minutes, if I get more than 7 of them, then I usually dont stop seizing until i get grand mal, so preferably I'd have to stay in bed for like almost an hour to avoid seizing.

It's so incredibly annoying how limited your mornings and sleep are in order to at least avoid, not even fully get rid of them, had like 10 myoclonic seizures and at that point I was just waiting for it to hit.

Another best thing is when I wake up and I wanna go to toilet, well of course if i seize once then I have the option to not pee for an hour, which as u can imagine isnt really the easiest thing, so I went to a toilet two weeks ago, got grand mal, fell, blood on the floor and my face with my lip cut and swollen.

2 hours ago, I go to the toilet to pee, same thing, fell, blood on the floor and my face covered in it again, lip cut and swollen, except before it was on the left side, now its on the right side, so I found it kinda ironic that its the same except other side of my mouth.

I was on Depakote 500-0-500, didnt really help, partially, also hated the weight gain and it made me sleep a lot, to like 9-10 hours.

Now I'm on Lamictal, 100-0-100, clearly not working at this dosage but I feel like it's better than Depakote, just need to raise the dosage, which I cannot because my neuro is on vacation for next 10 days.

Last time she said we can raise the dosage she didn't say to what but it's always been +50 in the evening and if that didnt work then +50 in the morning, have u guys ever raised ur dosage by urself if ur neuro sounded like it's okay to do so but didn't necessarily say you can do it?

I'd also like to hear ur stories with JME.

Posted Aug 3, 2026, 1:52 PM UTC

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